L.I.F.E. (Lifelong Insights For Exstrophy) Outcomes Survey

Advancing care, advocacy, and research for generations to come.

The L.I.F.E. (Lifelong Insights For Exstrophy) Outcomes Survey is a groundbreaking study developed by Dr. Hadley Wood and Dr. Annaliese Ionson from the Cleveland Clinic, and shaped by the lived experience of the exstrophy community. By gathering lifelong, patient-reported health and wellness data, the survey will help create a clearer picture of what life with exstrophy truly looks like. This effort will fuel breakthrough research, guide future standards of care, and improve the lived experience of every person affected by exstrophy.

Why Your Voice Matters

How has exstrophy or epispadias affected you? The L.I.F.E. (Lifelong Insights For Exstrophy) Outcomes Survey is a study developed by the Cleveland Clinic and the Association for the Bladder Exstrophy Community. The outcomes will help improve transition from the pediatric system, increase access to resources, and create better systems of adult urology care.

Until now, exstrophy research has been captured as a snapshot in time. This unique study is built for patients at every age, and patients will be re-surveyed every five years to understand the impact of exstrophy across the lifetime. Help us build the first long-term picture of what it’s really like to live with exstrophy and epispadias—from childhood through adulthood.

Are you a patient, or a caregiver of a young patient? We cannot do this without you! Help shape the future of care by completing the survey below, and please share with your exstrophy/epispadias friends to do the same!

Have questions about the survey? Send us a message!